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Colleen M. Peters, Aimee I. James, Irwin Tran, Jamie Kambarian, Shoshana Colman, Rajendra S. Apte, Kevin J. Blinder, Guarav K. Shah, Steven M. Kymes; The Impact of Diabetic Macular Edema on the Daily Lives of Diabetic Adults---A Qualitative Study. Invest. Ophthalmol. Vis. Sci. 2012;53(14):5449.
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Diabetic macular edema (DME) is a leading cause of visual impairment among diabetic adults. We used qualitative research methods to explore the impact of DME on daily lives and experiences of diabetic adults.
We used a cross-sectional qualitative study design. People with diabetic macular edema (n = 18) were recruited from retina practices at an urban academic medical center to participate in a focus group. Three focus groups were conducted, stratified by level of visual impairment. During the semi-structured focus groups, participants were asked questions about the impact of DME on their daily life and activities. Participants completed a brief demographic questionnaire before the focus group.
The data revealed a number of themes. A common concern was physical safety and fear of tripping or falling. Increasing impairments affected reading and driving. Social interactions were also affected, often because the participants could not recognize faces or facial expressions. A novel finding was that visual impairment affected participants’ diabetic self-care---through challenges in reading nutrition labels, seeing well enough to test blood sugars, reading medication directions, and checking feet for wounds or sores. Frustration was expressed by many participants with the delay in gaining vision correction due to the progression of their disease. Themes of positive affect (hope, coping, determination) and negative affect (worry, frustration) permeated discussions of life activities.
As reported by the participants in our focus groups, people with DME share many of the limitations reported by other people with vision problems. However, there are also limitations that are unique to having diabetic related eye disease and may affect ability to self-manage diabetes. This provides direction to clinicians providing care for patients with DME and for investigators conducting research into the quality of life and rehabilitation of people with DME.
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